Bladder cancer AFTER BCG

Hello @kevinpm. Your history sounds like my husband's only his started with a highly aggressive muscle invasive cancer. He was a BCG failure and was receiving care at Mayo Rochester. He had also had chemo initially following first surgery. His next trial was Keytruda, which had some side effects and still more new spots showed up in bladder over 4 months. By this time he had been back and forth with many cystoscopies and TURBTS and wanted to go for a cure. He had a radical cystectomy and prostatectomy 3 years ago and despite many postoperative complications and needing to self cath 3-4 times daily , he is cancer free and happy with the outcome. There are a couple of newer treatment regimens available now which were not then which he certainly would have tried prior to surgery. I know others have gone for years with less aggressive cancers and regular monitoring and TURBTS. They are working at saving the bladder more each year with newly approved treatments. Are you more satisfied with your medical team at Mayo?

@sepdvm Thank you for responding. Information you wrote is helpful. Glad your husband is alive and seemingly well. I am happy with Mayo, certainly when I compare it to what I had down here in Illinois. I guess I'm disappointed that there are different people with every step I take and that it seems as though no one says anything when the cancer returned. The PA doing my last cystoscopy only said we need to alert your Urology team. I'm on my way back to Illinois and I get a call that they are scheduling me for a resection four weeks later. No one will say anything after that procedure I'm sure and then I have to wait 4 weeks to do a zoom with (hopefully) the head of urology. I guess I would like someone to tell me that they have seen this before and what steps they have planned moving forward. Did your husband have a choice of a stoma or neobladder with the radical cystectomy/prostatectectomy?

@kevinpm My husband did have that choice. Because of his experience with ostomy supplies as a home health company owner, he wanted to avoid an ostomy. I will add that we had some issues with a lack of consistency of providers in Urology at times. I believe that they are so busy that it is hard to avoid. The more specialized his doctors became due to his various issues, the better the communication was. It seemed that he would get dumped into the survivors clinic group too soon after a surgery or procedure. He found that speaking with his surgeon's secretary for scheduling helped to avoid problems. While he has waited 4-6 weeks for a Turbt following cystoscopy, he has never waited more than a few days for results. He always left his cystoscopy procedures knowing what they had seen and what they were concerned about and that a plan was being set up. If you have questions about the lack of consistency with providers in Urology you can contact this office to discuss your situation.
Mayo Clinic Office of Patient Experience
Phone: 844-544-0036 (toll-free)
Email: opx@mayo.edu.
Mail: Mayo Clinic Office of Patient Experience. 200 1st St. SW. Rochester, MN 55905.

Unless all these urologists are with Mayo, why contact Mayo advocacy?

If BCG refractory: try localized chemo, or time released chemo or immunotherapy + chemo or proceed to RC.

Get a referral to a urologist oncologist ASAP.

FYI: an ostomy is for stool. A urostomy for urine.

@jaxfl, A colostomy refers to stool. An ostomy is having a bag attached to the body to contain either urine or stool. Just to clarify my use of the terminology.

Thank you

Technically you are correct but in daily parlance 99% of people relate to an ostomy as a stool ostomy and not a urostomy.